New here 😕

[Jeharell123]

Hello - I'm new here and reaching out in the hope of managing 'early' symptoms that are beginning to make me feel quite low. Reading the entries I have so much empathy and am in awe of the courage and tenacity of those suffering over such long periods. I went to the GP in November with a distinct pain in my left lower pelvic area - I could pint exactly to the 'niggling pain' that I could feel when I walked (only). I was sent for an ultrasound and vaginal scan and all clear - they just picked up a small inguinal hernia with no bulge externally. Over the months the pain spread across my pelvis, into my lower back and left hip on standing and walking, initially when this was for extended periods, now I can only stand for a few minutes without feeling 'it' (the pain in the area I can point to on the lower left of my pelvis" and the pelvic, hop and lower back pain starts between 5 and 20 minutes after standing or walking. Over the past few weeks it's now happening when I lay in bed and waked me in the night repeatedly. I had an MRI on Monday and am awaiting results (full spine and pelvis). I have painkillers but Naproxen now doesn't touch it and Cocodomol upsets my bowel which impacts the pain further. I have no bleeding, spotting, or other symptoms, although have had some episodes of night time nausea and acid reflux in the past week. The pain is so uncomfortable and impacting daily life (showering, shopping and now working).I'm 46 and beginning to feel quite low after 6 months of it gradually increasing, medical professionals are a little dismissive, although I appreciate the MRI. Exercise is difficult to commit to because of the pain. If anyone has any advice on anything other than being either in the bath or keeping a burning hot hot water bottle on the area to divert my attention from the pain to another sensation I'd be interesting in hearing how to 'wait well' for results and next steps....Claire 🤞

[Jeharell123]

Sorry about the typos 🤦‍♀️ Also, should have said I've become increasingly bloated over this period (maybe look about 5/6 months pregnant), and the only thing that relieves the intensity from standing /walking is to sit immediately and pain relieves after a few minutes, however in recent week its becoming uncomfortable to sit /lay from the discomfort in the front of my pelvis. It's the intense increase of pain during prolonged standing and manoevering out during the night / getting out of bed though that is impacting life.

[Salmonfishing in reply to Jeharell123]

Hi Jeharell123So sorry to hear you are in pain. I also have chronic lower back pain, right hip pain and intense pain in my pubic bone, and been like this for over a year.☹️

I also suffer from interstital cystitis, vulvodynia and irritable bowel syndrome.

I've also done the rounds of x-rays and scans but been told everything looks ok and it's just natural wear and tear.

I live in the UK and seen a NHS physiotherapist who accessed me and gave me exercises to do.

The NHS physio said they don't do hands on. So no back massage or manipulating. I religiously do the exercises everyday, and to an extent they do help.

I felt as though I needed more than just the exercises so pay myself to see a private physio who does hands on, on my back.

I think they key thing is to keep moving but don't over do it and rest when you need to.

My personnel advice would be to see a physiotherapist and get checked out so they can give you medical advice and the right exercises for you to do.

There was a waiting list of six weeks before I could see a nhs physio, not sure what the wait time would be where you live? Maybe if you could afford it you could pay for a one off appointment with a private physio to get checked out but still put your name down to see a nhs physio.

I hope some of this advice helps.

Let me know how you get on.

Take care.

[Salmonfishing in reply to Jeharell123]

About the bloating.Have you had this checked out by a gp?

If not, that might be an idea.

Also, you could keep a food diary to see if you think any food or drinks are causing the bloating.

Hope you get the results from your scan soon. 👍

[Jeharell123]

Thank you for taking the time to reply Salmonfishing Sorry to hear your journey of over a year, I just don't know how you all manage reading these stories, I have so much heartfelt sympathy as it impacts so many daily choices and basic tasks, everyday I just hope tomorrow it will begin to pass. I appreciate how many people are managing worse medical traumas so not to dramatise but I'm struggling with the lifestyle changes when I feel I'm young and healthy. I was referred to MSK and have seen a physio after ending up in A&E with what I thought was intensifying hernia pain, but after seeing a surgeon he felt further investigation was needed and I should request an MRI through my GP- he said the route was physio first (?) and monitor the impact of physio over 8 weeks, then MRI if no impact,but after my first physio appointment the physio phoned and said MSK had decided to refer for the MRI straight away. I find it difficult to tolerate the 3 exercises, 2 of which are lunges which I struggle with, but attempt on days that are more comfortable. Hopefully once the MRI results come back I'll know whether I should explore something else and will definitely consider exploring private if others have found this to be beneficial. After 6 months last week I a few days off work and I really don't want to not be working, but the hour drive each way and demands of being on my feet between periods of sitting was too much to face - disappointed to feel I don't have the resilience at the moment to manage anticipating staff stopping me in a corridor or playground and needing to discuss something and the panic of knowing the trigger those few minutes will cause for the rest of the day/ impact on sleeping at night. It's just crazy isn't it, I can't get over up until a year ago I was visiting the lake district 3 times a year with the family and walking fells and pikes for days on end. I'll have a look at tracking food as you suggest too. Thank you again.Hope you get some relief and enjoy the Bank Holiday.

[Salmonfishing]

Thank you for that lovely reply and sharing your story with me. Like you, my life is not as it used to be. I love going out walking too, but can't do the longer walks anymore.😕 We usually have a little holiday once a year and do lots of walking, but that hasn't been happening for a few years.

Have you told your employer about your condition and how much pain you're in?

They have a duty of care to help you. Maybe they can refer you to occupational health? There may be some equipment (desk, chair,) that could make it easier for you.

Even though I am still in pain I feel as I have made some progress so, I hope that gives you a bit of hope.

Enjoy your Bank Holiday too.

Always staying strong. 💪

[endoTHENmesh]

Hi! Small inguinal hernia during an ultrasound, likely while lying down? When you stand up it is likely the pressure of your abdominal organs under gravity will put pressure on (and enlarge) the hernia.

I had a obturator hernia that disappeared when I laid down for a MRI. It got progressively more painful over months until I could not stand or sit for more than a few minutes.

See a hernia specialist and see if you can get a standing up MRI. I suspect you need a hernia repair...

PS Make sure you discuss repair with and without mesh. I am allergic to many things and they had to do a 2 nd op to remove the mesh 😢

[Jeharell123 in reply to endoTHENmesh]

Thank you @endoTHENmesh, still waiting to see if anything comes back from the MRI I had 3 weeks ago which was laying down and incredibly painful in that position with a wedge under my knees for 40 minutes to the point where I was unable to get up myself when it was finished. Generally laying flat is less painful than that, but I'd been on my feet for a while prior to getting to the hospital - it has definitely increased when laying down over the months and does wake me frequently. If nothing shows on the MRI do you think I should still explore a standing option? I'm ready to seek private support now- have been chasing the results and been told due to delays it could be 8 weeks 😫, I realise it's just pain and not as serious as other people's illnesses but I can now only stand for a few minutes before the ache starts and then the pain in my pelvis, back and leg. Anyway, despite being off work and barely venturing out I've somehow managed to catch Covid so plenty of time to be on hold chasing the results this week! 😬

[endoTHENmesh]

I am so sorry you are going through this. My pain was excruciating and after 8 months with no answers, I was nearly suicidal. The process is stupid slow if they cannot see or palpate it directly outside your abdomen.

YES - I think you should insist on a standing MRI if the laying MRI shows nothing.

You can also try to schedule a consult with a hernia specialist immediately. Hernias do not go away, they get worse over time. Mine was crushing a nerve every time I was vertical in the beginning. Over time, the hernia opening stretched until eventually laying down did not stop the pain, because the material going through the hole did not go back.

Please let me know how you are doing!

[Jeharell123 in reply to endoTHENmesh]

So update is I saw the surgeon last week - I'm still waiting for the MRI results nearly 5 weeks on, but he said although he's not an expert at interpreting the spine MRI the inguinal hernia is small (8mm) and should not be the cause of significant pain when standing or the night pain when laying in bed, so has referred me for another MRI of the groin which I'm having next week. I did have my pelvis and spine looked at last time so thought the groin would fall into this area but obviously not.To be honest I feel quite low and deflated as he was very dismissive and I felt as though he questioned what I was saying. When I explained my lifestyle has had to complete change to manage the pain he kept asking, 'well, what else don't you do then?' He did say he may ask a colleague for a second opinion. I have received a letter today and his title is a general surgeon and not a hernia specialist, and that he will see me again in 10 weeks. The discomfort when standing for longer than a few minutes is so miserable and I feel I just try to avoid going anywhere or going anything buyt he explained it as a small hernia and as there was so much I didn't ask I'm not sure if there's a risk of it getting larger.